Letting my traumas speak, so they might be silenced.

stress

So, I am doing this thing that I do. Some like to call it procrastination, but I’ve started to use terms that are more honest wherever possible, so this thing is called “avoidance”.

When the thing cannot be done comfortably, efficiently, without stress, or with relative ease, I avoid doing the thing. “Avoidance”.

Right now it is about the bills, because there is stress, discomfort, inefficiency, and a bit of struggle involved in trying to figure out how to make money multiply without a magic wand or the art of alchemy to assist in the task. I don’t know what to pay and what to leave unpaid. I don’t know who might be gracious and who might attack the credit score I have been working so hard to improve. I know that all of the things need to be paid, eventually. And I know that one way or another, through begging or borrowing or more high interest loans that bury me in even deeper debt, things will be paid, but that doesn’t make the job of maneuvering and managing a too small budget less uncomfortable or less stressful, so I still want to avoid it.

A long overdue blog post is better than an attempt at bill payment … even one that details the stress I feel over the bill payment attempt.

I think that part of this avoidance is built into our DNA. We didn’t survive as a species by running headlong into danger with great stupidity and zero planning. We avoid situations that seem like losing scenarios as a matter of survival. Avoidance helps us stay alive, in many ways, so it can be an excellent mechanism for the continuance of the human race—which is likely a good thing.

But there may also be a negative side to this tendency toward avoidance. That negative side is the part that I think frequently trips me up and leaves me face down on the proverbial pavement of life. It is the tendency of our culture to avoid any sort of suffering, pain, or pretense of unease—or dis-ease—whatsoever. It is the glossing over of the lament in favor of pretending that all is well and good and easy, all of the time. It is the lie that we don’t just avoid the things that are uncomfortable, but that the things that are uncomfortable don’t exist—and if they do exist, that something is wrong and needs to be “fixed” and fixed immediately.

If you’ve read anything else that I have ever written, you already know that I suffer from chronic illness, both mental and physical in nature. Something will always be “wrong” with me. And the desire to either “fix” or deny the existence of the problem is, therefore, always with me. I’ve found, through many therapy sessions and lots of searching of my own spirit, that this desire is based largely on cultural perceptions. It is shameful not to “work”, “have a job”, “do something with your life”, “have a purpose”, and it is shameful to “beg”, “live off other’s hard-earned money”, “take what I didn’t earn”, “play the victim”, “act sick”, “sit on my ass all day”, “be lazy”, or not “suck it up”, “get over it”, “take some Tylenol and get off my butt”, “push through the pain”, or to be like “my friend”, “my husband’s cousin”, or any number of other people and “run 5k’s”, “go to work every day”, “take care of five kids”, even though they have [insert one of my illnesses here] “just like you”.

Not only do I cope with my illness every day, but I deal with the public perceptions and the cultural shame that goes along with being chronically ill.

A court has determined that I cannot work—that there are no jobs that I can do given my particular limitations, diagnoses, skills, educational background, work history, symptoms, and the way that those things intersect with the job market in my geographical location. “There are no jobs.” That is literally in the court transcript for you to read, if you were to read through the lengthy hours of Q and A that were required for us to get to the point where a judge determined that I am disabled.

But that transcript doesn’t matter to probably about 85% of the people who I come into contact with in my day to day interactions. It doesn’t matter because of this negative sense of avoidance. I’m supposed to avoid suffering and illness and flaws and bad shit. I’m not supposed to acknowledge that, but fix it, and fix it fast. I’m not supposed to admit that I can barely sit at this desk right now because of the pain in my back. I’m not supposed to admit that I’m at this desk and not a “work” desk because I am disabled. I’m not supposed to BE disabled. I’m supposed to take some Tylenol and get off my ass and run a 5k like aunt Janet from West Virginia!

Because we avoid suffering. We get over that shit, or we lie about it, or we become the kind of people who complain all the time but only a small, acceptable, mundane amount of complaining that is socially acceptable around the water cooler at our jobs. Because we are allowed to be moderately miserable all the time if we are still productive. But real, serious, deeply affecting problems are not socially accepted. Those we avoid.

I sometimes wonder who decides which challenges are acceptable and which are not.

When all the women have ovaries that stop producing more eggs, we call it menopause and call it normal. When all the men start having limp, less adept penises and lower sperm counts, we call it “erectile dysfunction” and make a billion-dollar industry out of making them hard again, instead of accepting that aging men can’t always perform sexually on command. It’s normal for a woman’s sexual function to change, but it is a problem to avoid and be “fixed” for a man? Who decided that? The pharmaceutical companies? The medical professionals? The sex work industry? Who made this a thing?

And who made being chronically ill unacceptable but being terminally ill perfectly fine? That question makes me sound like an asshole all the time, I know. But it only makes me sound like an asshole because of the perceptions already infused into those terms. Chronically ill. Terminally ill. One is a drain on society. One is a sainted state worthy of all the compassion. We all know which one is which. I’m not the sainted one worthy of all the compassion. I’m the other. And I am an asshole for pointing out that there is a bias. I am an asshole for pointing out that dying faster somehow makes you worthier of care. (At least in the eyes of many in our society, that is—it doesn’t actually make you worthier of care.)

Who decided that I need a “real job” to be treated like a “real person”? Who decided that I am allowed to be treated poorly because I am in a state of poverty—or that I deserve to live in an impoverished state if I cannot work due to illness? Who decided that $750 per month is the amount that a disabled person who has less than 40 work credits should be forced to live on, making this entire post even a thing that exists? And why do I not get any credits for the early years of my work history when I was delivering papers and babysitting, or for the years when I was working two part time jobs and going to school and raising a daughter as a single parent. That was more damn work than I have seen most anyone do—ever. And that doesn’t “count” for anything. Who decided that doesn’t count as work? Who decided I get $750 instead of $3000 because of those years? Who decided that my life isn’t valuable enough to be offered what I need to not be sitting at this desk, in pain, avoiding my bills like the plague.

If I had the plague, I would get more benefits. Because it would kill me. If you are dying they let you have a better quality of life than if you will live. Oh wait … not socially acceptable. We already went over that.

So, this avoidance, this thing that was written into our DNA as a positive survival instinct has somehow become a thing that we use to cover up and shame and deny and harm whatever is connected to our socially unaccepted suffering. And I don’t know that I will ever get a complete, straight answer about how that came to be, or who determined and decided what was or was not acceptable, but I do hope that I will someday begin to shape the conversation around why we do this, and why we need to stop doing this.

We need to stop avoiding suffering and pain and bad shit that happens, because it happens to all of us. It is part of the human experience. And it is an important part of that experience. While much of my suffering was regrettable, and I obviously would choose to go down another path if I could, the person I am today was forged in the flames of that suffering. Those challenges shaped me. And they made me a better person.

They didn’t make me a better person right away. In fact, they led me down a dangerous road to some very dark places. But that happened when I was trying to hide and avoid and stuff away all of the bad things. If I had been able to and allowed to cope with what I had experienced as a child, or a teen, in positive ways—expressing the pain and the betrayal and the confusion and the suffering openly and in a safe space—I would have avoided that road and those places altogether. I might have avoided mental illness and chronic pain altogether. (Nobody knows what causes fibromyalgia, in distinct terms, so I cannot know that for certain, but it is linked with stress and often presents in tandem with post-traumatic stress, so it is possible that without the PTSD there would be no fibromyalgia.) Our society’s insistence that pain be hidden likely caused me more pain.

But now that I am in a space where I am able to process and cope with and express all that I should have been allowed to express all those years ago, I am becoming strong and wise and good in ways I might not have were it not for the experience that I went through.

Lament shapes the spirit in beautiful ways.

Pain makes us compassionate, kind, understanding, gracious, loving, connected, and strong. That is not something that we should hide. And that is certainly not something we should avoid.

We still shouldn’t run, stupidly, toward danger without a plan. But there isn’t a need for us to hide and avoid something that makes us compassionate, kind, understanding, gracious, loving, connected, and strong. Frankly, hiding that seems like a stupid run toward danger … it probably is. And that is probably why so many things about our society today seem so messed up, in the sense where one person refuses to lay down their “right” for the lives of, potentially, thousands of others.

We are in danger, and we are being stupid. Because we have hidden so well and avoided so effectively the thing that makes us compassionate and kind and understanding and gracious and loving and connected and strong, that we have become the sort of society that breaks apart and leaves individuals to be slaughtered as “they”, somehow apart from us and without our compassion, rather than feel the pain of the truth—that we have become so unfeeling that we cannot mourn our own brokenness, so we deny it again and again.

We have put some imagined dessert to rights of the individual above the conscious collective of the society. I now becomes more important than we. And that is a grave error.

We, the people—that is how it begins. Not, I the individual who wants a gun and an erection despite the compassion and the biological facts that are required for me to understand the world around me.

“I don’t suffer. I don’t have pain. I take a Tylenol and go to work. I have rights.”

But that isn’t true. We all suffer. We all have pain. We all have days when no painkiller will dull the ache we feel—be it physical or emotional. And, most importantly, WE have rights—all of us together, in concert, and being accountable to one another. The only way to accurately see that, is to start to uncover the pain and suffering and to acknowledge it, to express it, to cope with it, and to begin shaping yourself and your life into one that has compassion, kindness, understanding, grace, love, connection, and collaborative strength.

Stop the avoidance. Embrace the lament. Feel. Suffer. And come out the other side a better version of yourself.

I once, according to my dad’s telling of the tale, came downstairs from my room, obtained a jar of jam from the refrigerator, took a spoon from the silverware drawer, and started to eat jam directly from the jar. When Dad questioned me, and asked what I was doing, I became defensive. Whatever was happening in my head, it was determined that jam eating in the wee hours was normal and not an offense of any kind.

And that is a fun little anecdote regarding the sleepwalking of my childhood.

There are many.

My dad also tells tales of other sorts of sleep disorder, however—sleep terrors and nightmares.

Sleepwalking is rare. Estimates place the percentage of the population that completes complex action while asleep around 1 to 15. The phenomenon is a sleep disorder, and it is usually associated with either sleep deprivation, stress, or both. The combination of this disorder with those of nightmares and terrors is even more rare. It is hard to say how many people might suffer from all three, because the one experiencing the events often has no recall of the events.

In the past few years, I started to sleepwalk again. While I have no recall of the events, I have evidences of the events. One morning, bread was laid out on the kitchen island, as though I were preparing to make a sandwich. Another morning, I woke to toasted bread, still sitting in the toaster but stale and cold. On yet another occasion, I woke to near-freezing temperatures and realized that I had turned the thermostat all the way down as I slept.

It wasn’t until I mentioned these events to my sleep specialist that I started to understand the presence of sleep disorders is directly related to stress. And in my case, that stress is related to a loss of bodily autonomy through chronic sexual abuse and medical testing and treatment for bladder and kidney issues. Usually adult sleepwalking is tied to and triggered by childhood stressors. My sleepwalking (along with incontinence and suicidal thoughts) returned shortly after a visit from my brother, and repeated arguments that took place during that time. The insistence that I do as he believed I should, and the lack of respect for me and my autonomy that such insistence belied, threw me right back into that childhood self with symptoms of extreme stress.

Getting along with my brother is an impossible task. He wounded me in ways that can possibly (I hope) be forgiven, but can never be forgotten. He created a vacuum in my life that sucked in all sorts of damage, abuse, and pain. And while some would argue that the “victim card” isn’t a thing that I get to “play”, the fact is that I am a victim of horrible abuse that does not stop affecting me. And having a perpetrator of abuses in my physical space, and having that perpetrator tell me what to do, is an impossible to ignore affront, whether it is meant to be or not.

People talk about “finding their inner child”, like it is a fun and freeing thing. But my inner child is terrified, wounded, confused, and under mind-altering levels of stress. I don’t want to find that—ever. But I don’t get a choice, because that child finds me on a regular basis. She returned in a blink of an eye after that visit with my brother. And she didn’t leave.

I began sleepwalking again because that child started running the show while I slept—the early expression of my post-traumatic stress coming back into my experience. This is often the case with sleepwalkers. If we do it as adults, we likely also did it as children.

I don’t know that I eat jam from the jar in my sleep anymore. But I am definitely exhibiting the stress that I did in childhood within the circadian patterns that I currently experience.

The nightmares I can make go away.

I didn’t know that was possible until a few years ago, when the nightmares were increasing, and the trauma of the past was leaching from me and leaving a trail of symptoms across my life. It was at that point that I was finally properly diagnosed with C-PTSD. And that diagnosis brought the beloved off-label use of blood pressure medication which stops the nightmares. Or, to be more succinct, it stops me from engaging with the nightmares or remembering the nightmares.

Minipress, or prazosin, as a treatment for PTSD, was discovered incidentally by a Dr. Simon Kung at the Mayo Clinic in Rochester, MN. The medication had been around for decades, but it was not noted as an effective treatment for nightmares due to PTSD until 2012. Thankfully, I receive medical care at a teaching hospital that uses cutting-edge treatments, and I started on prazosin mere weeks after my diagnosis. My brain can still engage with flashbacks and nightmares, but my body is prevented from interacting with that engagement, and I remain asleep and unaffected by the subconscious terror. It still amazes me that this is possible, after having interacted with this terror for over 30 years. I am in awe that we can simply shut off that terror during the night. And I am extremely grateful for Dr. Simon Kung’s work to find, study, and disseminate the knowledge that I, and many others who suffer PTSD symptoms, can experience peaceful sleep.

While the medication doesn’t prevent me from sleepwalking, it makes my sleep much more consistent and much less traumatizing. Having sleep, the restorative and balancing action your body requires, become a source of fear is a terrible thing. And being able to participate in and enjoy sleep is nothing short of miraculous for my beleaguered and exhausted self.

I feel like this turned into a term paper, and not a blog post. But it is important, apparently, for me to recognize and report about the challenge of suffering symptoms of stress and trauma during the night … and to present alternatives.

Because, as someone recently told me, people need to hear my stories. And I am committed to the telling not just because I think it might assist others, but because speaking truth is freeing. Expressing the challenge and the need and the struggle and the fight and the overcoming of obstacles and the strength and joy and relief of that overcoming is important. It is such because my voice is my only chance at regaining the autonomy lost as a child. My voice is the only thing that can offer that child some peace and restoration. That young self, and my triggered adult self, both need to know and feel and trust that there is a path to good, and that we can walk that path and find that end.

I might make sandwiches or eat jam from the jar in the night for the rest of my life. I might, just as easily, find the release of stress that I need to stop that sleepwalking from happening any longer. And it is necessary for others to see this hidden-by-the-dark experience, and to validate that experience.

Because while I don’t fault those in my life for not knowing that I was expressing in my quirky sleepwalking moments the grave burdens of an abused child. The science wasn’t there. The advocacy wasn’t there. The skilled psychiatric specialists were not there. The only thing that my dad could see was a girl doing weird things—expressing the inexpressible in the ways that my subconscious self could. And it couldn’t express it well enough, or loudly enough, or clearly enough to spare me the trauma … but at least I tried to express it in some way.

I can express it now. I’m determined to express it now.

I’m determined to give that child a voice that can be heard, understood, and validated. I’m determined to let her speak, to cry, to scream out the things that her jam-eating, sleepwalking, nightmare-having self couldn’t quite manage to express.

That little girl experienced chronic, escalating, sexual abuse. That little girl also had doctors and nurses poking around in her most sensitive and sacred parts without any sort of trauma-informed care. That little girl was lost in a sea of pain, and she nearly drowned in those deep and dark waters, as the waves beat her and threw her against the rocks. That little girl needed to say that she was dying from the weight of trauma and shame and conflict and fear and confusion laid upon her tiny chest—crushing her ribs, puncturing her lungs, and making it impossible to breathe.

That little girl also needed others to hear her and to offer validation and to acknowledge the injustice and offer hope and comfort and help. She still needs that.

I try to offer it to her. But it is hard to trust just one voice (especially when so many deceptions have been spoken in your experience). It is hard to assure her that she deserved safety and autonomy and privacy and justice and good.

It is hard to assure my adult self—this grown-up version of that girl—that she deserves safety and autonomy and privacy and justice and good. It is hard to believe that my voice can make a difference. It is hard to believe that I am heard. It is hard to find validation. It is hard to find hope and peace.

In fact, the too much started the day before, and I didn’t do a good job of mitigating it at the outset. But who is great at mitigating, really?

On Thursday, when I took the bus to the doctor, there was so much chaos. There was a woman who insisted her daughter, who looked to be about 10, was 6, so she didn’t need to pay fare for the girl. And she kept arguing with the driver long after she go to her seat (not having paid, and seemingly having gotten what she wanted). She would yell some angry assertion about his dumbness and him minding his business, which I am relatively certain he wanted to do, but she kept yelling out offending shit, and it is really hard to mind your business when someone is shouting theirs at you through the bus.

Not long after, a man got on the bus without paying. We waited several minutes while the driver tried to get the man to leave or pay, to no avail. So, finally, and with much frustration, the driver went on with the route. I was running late by this point, and getting internally frustrated by that lateness. And then the lady with the very-old-looking-probably-not-6-year-old started up again. She was now angry that the driver let the other man get by without paying. Even though she had gotten by with not paying fare for the child. It became a mess of people yelling out random shit about the offenses against them, when the only person who could rightfully be upset, in my opinion, was the driver of the bus.

It got to be too much. I quickly snagged a seat that let me curl up toward the window and cranked the volume on my headset. But too late. Tears started forming, for one reason or another in the corners of my eyes. Was it fear? Frustration? Stress? Anxiety?

Whatever it was, it threatened to pour down my cheeks, which would not have been a great thing and would have added to my emotional upheaval. So I pushed it back.

There is and has been a place to push things since my childhood. I know it well. So many things were too much for my small psyche, and I could not deal—not just would not, but literally was incapable—with that excess. So, it got pushed into the place.

Obviously, the place isn’t a physical space, as far as we know. There are multiple synapses that stop firing or misfire or disconnect in the dissociative brain. It would be much easier if there was one spot that held all the excess. Maybe then we could zap that space into connection, or cut it out altogether, or some other frighteningly macabre way of coping.

As It happens, there isn’t an easy solution, macabre or no.

Once I got off that bus, onto another, and eventually to my appointment, the overwhelmed feeling should have dissipated. But it didn’t.

That question. The question. “When did you first become aware that your speaking was different?”

I was meeting with a vocal specialist. The troubles with my voice have kept me from living life in the way I would otherwise choose. I long for my singing voice. It is definitely time to address the situation. But, maybe somewhere in the back of my mind, or shoved into the place, there was the fear of this question.

I didn’t notice. Tony noticed. Tony mocked me, mimicked me, publicly shamed me. He told me, in the most hateful and terrible ways, that my voice was different—a strange way of clearing my throat, or making a guttural sound where there ought not be one for an English speaker, or the way that my words have a bit of a sing-song ending at times. He used that vocal abnormality to hurt me.

And when she asked the question, and I tried to respond, I cried.

The thing is that the place sometimes overflows. No amount of strength or determination can keep all the too much things from spilling over at times—usually at very inopportune times. And the place overflowed onto my face and neck in the voice doctor’s exam room.

She was kind. She was understanding. And she let me get through that little moment when the place door creeped open a sliver and stuff spilled out, and then she got on with our work. She showed me the inside of my throat while I was speaking and singing. She referred me for voice therapy, changed up my meds, and referred me to neurology. Seeing my throat and my tongue and my voice box in action made the moment when I cried seem miles away. There are reasons. They can be addressed. And that brought all sorts of relief, and shoved Tony’s asinine behaviors back into the place. Those behaviors might come out in next week’s therapy session, but for now they are not overwhelming anymore.

You might think that is the end of the story. I faced the overwhelming events and got on with my life, yes?

No.

The feeling didn’t lift. I watched Netflix. I worked on crafts. I took a shower. I took a nap. I went for a swim. I got a haircut. I took a walk. I wrote. I entertained the dog. I texted with friends. And through all of the really good coping strategies, the feeling still stuck. It wouldn’t leave.

And it became more and more pronounced. It became more anxious, more desperate, more affecting. Until last night when the place sort of exploded into the forefront of my brain.

Here’s the thing. The place scares some people, but some people take it in stride. I’m forced to take it in stride, whether I want to or no. And I know that the preference for others is to not take it in stride. There are only a few people in my life who can and will and do stick around when the place shows its face.

Last night, it unleashed itself in full force upon the “bae of the day”. (I call him that not because he is expendable or will be replaced tomorrow, but because I’m not going to use his actual name here—too early for that. Plus, it rhymes, and who doesn’t love that?)

I think that I was a bit shocked when all the overwhelming feelings channeled into me having crazy anxiety over what and how and why we were connecting with one another. I am experienced enough to know that it is best to let things play out in new relationship of any kind, and not to force it. But the place doesn’t know that as well as I do. The place might be in my head, but it doesn’t usually communicate with the other areas in the brain, so it doesn’t act with reason. And this irrational fear that I was misreading all the signs and that I wasn’t important and that I was secretly being played came flying out of the place. And bae of the day has NOTHING to do with all that shit that escaped the place. He has in no way acted in a manner that would make the place’s emotional outburst reasonable. But, again, the place doesn’t act with reason.

But here is the beautiful part of the story. He met the place with unflinching care, kindness, and understanding. He engaged the place with honesty and respect. He accepted the place, and he honored it, and in doing so he accepted and honored me in ways that I don’t even fully understand. Nobody has ever met the place with as much grace as bae of the day met it. And because he did, he immediately shut it down.

He shut it down not in a way that made me force my feelings and overwhelmed state back into the place. He shut it down in a way that let me leave it out. He shut it down in a way that allowed me to let it be, let it show, and potentially let it go.

And this morning I was thinking about it, as I woke in peace and felt lighter than I have in many days, and I wondered what life might be like if all the people met my place in like manner. I’ve spent about 35 years managing and monitoring the place. I’ve been trying to stuff more and more into that place as more and more things turned out bad and wrong and painful. And I can count on one hand the number of people I trust to meet the place with the grace, kindness, and understanding that is required to process, and to make the place a bit smaller. But what if there were more than a handful of people who allowed the place and its secrets and its struggles to come out into the light?

That would be earth-shattering. That would change everything. That would be a total life-altering experience. And that would heal so much that is broken. The place is filled with brokenness. That is its hallmark. That is its purpose. That is its truth. It is filled with every shard that ever broke away from my heart and my spirit. It is filled with every hurt I cannot bear.

But when someone else bore the hurt with me, everything changed. That hurt couldn’t hurt me quite as much anymore.

I’ve learned over a lifetime of keeping the place stocked with secret pain that people don’t like to bear the hurt with me. I’ve seen the little cracks that open up end relationships, create dangerous situations, and bring shame and judgment upon me. And I cannot imagine EVER opening the door to let everything out at once. That might be downright lethal.

But I have more hope today than I did yesterday. I have more hope that there are people out there like bae of the day. I have more hope that the place could potentially be emptied bit by bit, shard by shard. I have more hope that there is healing, and that my whole life doesn’t need to be defined by this PTSD label (though some of it will always be there—my brain scans will attest to that).

And if you are a person who has quit me or threatened me or judged me over the place, I forgive you and I understand that. I have days like yesterday, when I cannot even cope with what lives inside of that place, so I certainly have no hard feelings toward others who cannot cope with it.

If you are a person who understands this post, and feels the weight of the place in your own spirit, know that there is help out there, and you need not be ashamed or afraid—but you are also totally allowed to feel ashamed or afraid, you are entitled to those feelings.

And if you are a person who has faced the place and stayed in my life, you are fucking amazing. And I will cling to your responses, continually holding on to the hope that the place might empty, and my heart might heal. I love you like crazy.

There are these challenges to living with a dissociative disorder. There are these struggles with managing the rage and the depression and the isolation that such disorders cause. There are these outcomes of loss and further pain that accompany the misunderstandings about and the actions precipitated by such disorders. But there are also these people who understand, and who love, and who respect, and who assist, and who offer chances and graces and changes.

I am so grateful for the people who support me in any and all ways. But I am most grateful for those who let the place be a part of me, and don’t shy away, and let me work my way through it and toward an integrated brain and a more balanced life. Too much suddenly becomes a tolerable amount when you find those who would bear the weight alongside you.

I’ve found another who will help me bear the weight of the place. I’m grateful I have the opportunity to know him. I’m grateful for what he carries.